On Being a Patient: Physician as Patient: Lessons to Learn.
Annals of Internal Medicine. 7 September 2004, Vol. 141, Issue 5, Pages 404-405
Peter A. Beatty, MD, FACP
I have been a practicing medical oncologist and hematologist for 20 years. Although I initially trained in academic bone marrow transplantation and cellular immunology, I decided against an academic life in favor of a purely clinical career because I was more of a clinician than an immunologist. On a personal level, I developed relapsing-remitting multiple sclerosis shortly after I moved into my community practice in oncology and hematology. Over these 20 years of practice, I have had 2 episodes of transverse myelitis, 1 episode of internuclear ophthalmoplegia, and 1 episode of left-sided apraxia. None of these events have incapacitated me or forced me to take time off from work until recently, when I experienced another relapse of my multiple sclerosis. I lost my vision when I awoke on the morning of the anniversary of my wife's death from disseminated breast cancer. As a patient, I am trying to grapple with this new turn of my illness from the perspective of someone who also happens to be a physician who cares for patients with life-threatening illnesses.
As a physician, I have rarely given much credence to "stress" as a factor in illness. In my line of work, it is difficult for me to believe that stress has anything to do with colon cancer or leukemia. I can neither measure nor image "stress," yet how can I explain the coincidence of my multiple sclerosis reactivating on the anniversary of my wife's death? That morning, I had no nausea, no abdominal cramping, no pain of any kind, no palpitations or skin rashes. Aside from thinking of her and our life together, I had no evidence of any "stress." And yet, I woke up with impaired vision.
I am more of a believer now. Whatever stress is, it was present that morning and profoundly altered my immune system to behave in a dysfunctional fashion. I have no doubt that the immune activation that happened to me could adversely affect the outcome of a serious pneumonia or a case of active lupus. "Stress," which I can neither feel nor see, has affected my own health. I am confident now that it affects my patients' illnesses and undoubtedly leads to poor outcomes in ways I did not understand in years past. Stress contributes to illnesses through initiation, maintenance, and magnification of the processes responsible for the disorders. Now, as a physician, I understand better the need to respond emotionally to the reality of stress in patients' lives and to show empathy. A meaningful, empathetic response to patients makes the physician-patient encounter more therapeutic and useful.
To be precise, my new lesion, which caused my multiple sclerosis relapse, was a left homonymous hemianopsia, something I had not thought about since medical school. Moreover, for someone who reads charts, examines laboratory data, and reads tables and graphs in journals, its effects have made medical practice more difficult for me. I have a diminished area of focus on the left side of my vision. I now understand that my vision is as important to my occupation as is my ability to use a pen, to write orders, to palpate an enlarged and tender liver, or to auscultate a soft aortic insufficiency murmur. My vision was one of the many things in my life I simply took for granted. Until my vision recovers, however, it is harder to practice as a medical oncologist or hematologist; I might still be a father, a widower, a weekend cook, and a lover of groundcovers, but it is much more difficult to function at the same level as I did previously. Losing my sight and profession at the same time has been profoundly unsettling. It challenges my fundamental identity. Like hemianopsia, my professional identity was something I had been too busy to reflect upon seriously, but I now understand that illness takes our identities away and makes us different people. I know that anyone who has ever cared for sick patients has seen this, but I comprehend this at a visceral level in a way I never did before. Illness robs us of our sense of self and who we think we are.
I would be disingenuous to dwell entirely on the disability my hemianopsia has visited upon me. There are actually some gifts that flow to me as a patient from the illness. Beyond the biological and physiologic aspects, illness has the potential to provide a metaphor for life, which, when well turned, can be useful and instructive to us as humans. Suffering reminds us that life is both short and fragile and not to be taken for granted. This kind of insight is trite and hackneyed until it is made relevant, and personal suffering makes these kinds of insights powerfully relevant. As a physician, I tend to lose that perspective. I try to focus relentlessly on the physiologic and anatomic because that is our training. Our scientific training does not instruct us in suffering or anguish. We are taught to focus on objective, measurable, and quantifiable biological syndromes. Recognizing and treating medical entities like gram-negative septicemia or bowel obstructions demand clear-headed thinking about pharmacology, anatomy, and physiology, rather than the emotional complexity of suffering. And yet, as I reflect on the possibility of my own potentially devastating visual disability, I find myself thinking not about autoimmunity and multiple sclerosis but rather my family and my real identity: Who am I if I can no longer work or see? I think how odd it is, considering my personal background in cellular immunology, that I do not obsess on the arcane details of autoreactive T cells in multiple sclerosis, but rather on soft, nonquantitative issues such as my children and my deceased wife, our life together, and ruminations about the future. Must we lose our sight to discern who we really are?
As I think about my life and my family and struggle with my identity, I find it oddly comforting to be able to trust my physician to make prudent treatment recommendations. Trusting my neurologist is liberating because it frees me to reflect on the things that really matter to me, and that trust will speed my recovery emotionally and physically. This point of view places the treating physician in a paternalistic role objectionable to many health care consumers. However, from my own personal perspective as a patient, trusting my doctors alleviates a substantial amount of stress by avoiding the process of second-guessing my physician. In this manner, the doctor-patient relationship avoids becoming adversarial and actually can become therapeutic, both emotionally and physically. The benefit to me as a patient derived from trusting my physician was another insight I had never understood about illness until I lost my vision.
As a physician, I understand that there is much randomness to sickness and health. We all see this. We see smokers and drinkers who somehow defy all odds, and then other patients who are cut down or disabled unfairly. I do not believe that "Why?" is a useful question for these injustices. "Why?" implies a reason, and attributing causality has limited benefit for patients except to avoid future mishaps. Rather, the utility of suffering is that it helps us sharpen our internal focus to more clearly see the true contours of our lives. This sharpened focus can be potentially transforming for patients, and it would be wise for us as physicians to acknowledge this. If illness changes our identities and the way we look at life, let us try to profit from the change emotionally and learn from the different perspective it gives us. Let us learn to empower our patients to see what is important in their lives and help them embrace those entities. There are always lessons to be learned.
Peter A. Beatty, MD, FACP
University of Wisconsin Medical Foundation
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